Treatment Options: I want to investigate... - CLL Support

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Treatment Options

Wendy328 profile image
29 Replies

I want to investigate treatment options. Is that a smart thing to do now or wait until my Dr suggests something then look it up? He hasn’t said I will start treatment, but I think it’s coming. 5 years on W&W lymph nodes enlarging .

29 Replies
GMa27 profile image
GMa27

You could wait. Things change all the time. My hematologist gave me about 6 month warning. You may have a year or two more to wait.Then my doc said it's getting closer & told me what she wanted me to do for treatment. She sent me to get second opinion 3 months later & had me tested. I was in treatment shortly after.

Do you see a regular hematologist or a specialist? You can ask your doctor if he thinks ur nearing treatment. You may not be or will need time to get second opinion.

Wendy328 profile image
Wendy328 in reply to GMa27

I see a hematologist in a cancer center. Never thought he might send me for a second opinion, but I do have one in mind.

GMa27 profile image
GMa27 in reply to Wendy328

Just because a doc works at a cancer center doesn't mean he is a specialist. Not saying he isn't a great doc. My hematologist is not a specialist but she has been wonderful & I was glad she suggested I go to one. Even tho it was just for second opinion & I was able to be treated by her. A specialist does work at a cancer center like Moffitt in Tampa, Mayo Clinic in Jacksonville, MD Anderson in Houston, Dana Farber in Boston, The James at Ohio State in Columbus, Ohio. Specialists have teams, publish articles & do research. Does that describe your hematologist? What state do u live in?

Wendy328 profile image
Wendy328 in reply to GMa27

I live in Connecticut. Cancer Center is affiliated with Yale.

GMa27 profile image
GMa27 in reply to Wendy328

Look up ur doc. If he publishes, researches etc then he is considered an expert. My friends have great hematologists that work at cancer centers but are not experts. No matter what, always get a second opinion. I actually got 2 expert second opinions. When treatment choices come up- it's a huge decision. Hopefully you will have a long W&W! 💕

SofiaDeo profile image
SofiaDeo in reply to GMa27

My first hematologist was awesome IMO. He hadn't had many (if any) CLL patients, but he read everything about it (as I did) and so we discussed what the current treatment options were at that time. He had no problem with another doc (research specialist) recommending treatment, and in fact it got delayed because he wanted me to see that specialist once again for assessment, before starting the treatment that the researcher sent.

So a second opinion is good, and IMO if one's case isn't super complicated and the doc is following current treatment guidelines (and not something from even 5 years ago) one should be OK. Unfortunately some of us have "more unusual" or "more difficult" presentations, and should definately seek out a specialist for overall care. And if there are complications, seek out a specialist before jumping into any treatments (unless it's something like a potassium or kidney or liver lab value that needs be treated).

Here's an example: I had labwork come back from a local, non specialist hem-onc lab that was read as Blast cells and everyone got all excited. After it was all over, the specialist I now see commented that some of his patients with 17p deletion have overly large lymphocytes, as opposed to the classic small CLL ones. He knew that; the non-specialist folk didn't. So when the first hem-onc was urging me to drive directly to the hospital to get admitted for treatment, I said "let's repeat the test". I also happened to be asymptomatic at that time, with a CLL that generally made me feel awful when it was active, so I had more data points to work with than that local hem-onc. I would say

AussieNeil profile image
AussieNeilAdministrator

Which country do you live in? While it's certainly a good idea to study up on your possible treatment options, note that a primary factor in limiting your choices of treatment are the country you live in. Also, your cancer centre determines which clinical trials are available to you. Clinical trials are an excellent way to gain access to treatment options not available generally for a further 5 to 20 years later. One positive advantage of having cancer - yes there is one, is that clinical trials are done with arms in which the new treatment is pitted against what are expected to be inferior options.

Neil

Wendy328 profile image
Wendy328 in reply to AussieNeil

Neil - USA good thoughts. That’s why I love this group. I don’t want to go in blind, but I know too much info can cause the same effect. So I guess it’s W&W. Lol!!

Ediemarie profile image
Ediemarie in reply to AussieNeil

Are there risks of doing trial treatment versus proven treatments? Do most countries have same top meds and share with other countries. I am in US.

AussieNeil profile image
AussieNeilAdministrator in reply to Ediemarie

Making generalisations is dangerous. There are understandably higher risks in early phases, when doses are being worked out and response rates determined. That's countered by closer monitoring. For that reason it's almost an altruism that when drugs are approved, you don't see results as impressive as during the clinical trial.

Drug development and treatment protocols are most often developed in the USA; the larger CLL population helps. That's because CLL drug development is encouraged in the US and EU, due to CLL having orphan status. Recently, more drugs are being developed by Chinese pharmaceutical companies.

Larger trials often require international sites to get the trial numbers. It's rare to see CLL studies approach 1,000 participants. Proven treatments obviously have more data behind them, so more experience. They may have a higher risk compared to later generation version of the same drug.

Neil

Ediemarie profile image
Ediemarie in reply to AussieNeil

Sorry but just trying to understand the safety of clinical trials. Makes sense about the later phases of trials.

Big_Dee profile image
Big_Dee

Hello Wendy

I would suggest you hang out on this forum, you will pick up a lot of information on different current treatments as well as developing treatments. When you discuss possible treatment with your doctor your decisions may well be based on any other health issues you may have besides CLL. You may also want to look into CLL trials and that takes some time, so you may want to get a head start with your doctor. Blessings.

Wendy328 profile image
Wendy328

Good idea Dee to check out some trials.

lankisterguy profile image
lankisterguyVolunteer

Hi Wendy,

The advice about waiting until you need treatment is OK for the calmer patients, but if you are like me, you want to explore everything possible and learn as much as possible today.

Since you say your doctors are: "Connecticut. Cancer Center is affiliated with Yale" and if your doctor is NOT: Francine Foss, MD, Yale Cancer Center, New Haven. I think you may be able to use this free service to get a 2nd opinion from a CLL expert by video from your home: cllsociety.org/programs-and...

Here are some recent postings that may be interesting:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

You can also see what others have suggested by looking for the box on this page labeled:

Related Posts

*Treatment options for del13q mutated CLL healthunlocked.com/cllsuppo...

*HELP with TREATMENT OPTIONS!! healthunlocked.com/cllsuppo...

*CLL treatment options (skip this one since it is 5 years old)

*Need a summary of treatment options healthunlocked.com/cllsuppo...

*2nd round treatment options healthunlocked.com/cllsuppo...

-

Len

gardener58 profile image
gardener58 in reply to lankisterguy

Len, I'm in Connecticut also and am wondering about your statement on Francine Foss. Why did you single her out???

lankisterguy profile image
lankisterguyVolunteer in reply to gardener58

Since she is listed as a CLL expert here: cllsociety.org/newly-diagno... the CLL Society healthunlocked.com/redirect... probably will not provide a free 2nd opinion. So your insurance would likely need to pay for the 2nd opinion.

I would suggest you to go to one of the NYC doctors like Dr. Lamanna who will be on a Facebook live event today at 1:00pm facebook.com/events/1223166...

Or Dr. Richard Furman- my doctor.

Len

cllady01 profile image
cllady01Volunteer

Wendy, I agree with Len. I wanted to know what was available and was able to find that info here when I was in my 15th year having had no treatment. Then I asked my Specialist what he was thinking about for any treatment I might need in the future. He suggested possibly Venetoclax and Obinutuzamab. It was in trialing status then, but he was one conducting a trial and could see firsthand the possible final results).

At the time for treatment he suggested either Acalabrutnib or V+O. So, having had about 6 years to read here about the experiences of members with both treatments, and being 81 years old, hoping for this to be my first and last treatment—so one year would suit me better than having to be treated for an unknown length of time, I chose V+O.

So, yes, do investigate what is available now AND what is being trialed AND see if your Dr. has any thoughts at this time about what treatment would fit YOUR CLL--let the Dr. know you are just exploring options.

Wendy328 profile image
Wendy328

Thanks so much for the support!

kitchengardener2 profile image
kitchengardener2

I was diagnosed in 2018 but in retrospect feel that I was undiagnosed for years before. I had three years watch and wait before starting Acalabrutinib. I wasn't offered any other options. It's been brilliant so far and my blood numbers are considered within normal ranges.

I am 70 years old and in UK. I have a consultant heamatologist.

Good luck with whatever you decide.

claree_ford profile image
claree_ford

hello Wendy, it’s horses for courses isn’t it? I was diagnosed five years ago now and all I took on board of the treatments was that there were new and improved options coming on board all the time. So I took the view that there was (as the Manx would say) time enough (I can’t spell it but traa del lourr, traa de lourr is the Manx version of the Spanish manana).

But that’s me, not you. If you feel a need to know what the options are now, then you do.. (I’m only a quarter Manx but I think I got the full dose of “time enough” attitude!)

May you keep on watching and waiting long enough for what you learn to be out of date by the time you need it 😊

Clare

GerryPL profile image
GerryPL

Lots of good advice here. I finished O+V 12 months ago and apart from diarrhea no other side effects and my final CT scan was completely clear.

There are of course a multitude of new treatments coming along but I would caution seeking too much medical advice. I first went to an international expert in London for just one meeting just to get some background and information about the latest treatments. Then found a local haematologist I trusted who was not a single specialist in CLL but still gave me the same options as the expert.

My attitude now is not to completely exclude another meeting with the expert but basically to trust my local haematologist and take his advice. I don't continually follow the latest medical advances and don't want a continual battery of new tests and meetings.

I am not saying my approach is applicable to all but it does permit me to freely get on with my life and not worry about the future.

Ediemarie profile image
Ediemarie

Definitely need a CLL specialist... A question for others: do doctors recommend the long term treatment versus the short term first... Is it true long term treatment lasts longer resulting in possible longer time to remission and then the short term ones are subsequent options...right?

Wendy328 profile image
Wendy328 in reply to Ediemarie

A recent conversation with my Dr mentioned both long term and short term treatment. This a a brand new Dr to me my previous one retired. This new Dr has taken different blood tests than I’ve had in the 5 years that I’ve been on W&W. Not sure if it’s is style or are new eyes seeing something different. My next appointment is 2/3/23. I will have a lot of questions for sure.

SofiaDeo profile image
SofiaDeo in reply to Ediemarie

I think when the "long term" drugs were developed, the cancer resistance wasn't anticipated. Some folk are not getting resistance and have few side effects. Others are seeing resistance, or having awful side effects. No way currently to predict up front, what happens. Still others want a shorter treatment, to be done with it. I think there are a number of Phase 3 trials out, trying to see if one combination is actually superior to another. Right now the treatment algorithm has a number of treatments being equal, and one chooses based on paten specific variables. As opposed to one treatment having a definite edge over another.

JLJC profile image
JLJC

when I was diagnosed with CLL I became totally consumed with education about CLL and treatment options. I continued to follow up and stay informed on treatments as they changed and by the time it was time for treatment I felt very informed about what was available to me. I have the best Dr who always encourages me to know as much as I can and ask questions. When the time came the discussion was easier because I knew what Dr was talking about. Some people might want to wait and not be bothered but I always believe that “Knowledge is Power”. Good luck 💪🏼💪🏼

lexie profile image
lexie

When I was diagnosed in 2015 by a hem-onc she said BR would be my likely eventual treatment. I saw a CLL specialist 2 months later who said Ibrutinib. Each year my specialist updates and describes the treatment options he would recommend in the event that I would need treatment. Since those are changing fast I have only familiarized myself with generalities, basics, and side effect improvements. I have a good grasp of these so when treatment comes, which I was just told is nearing, I should be able to incorporate new details. However, my CLL specialist is very thorough when explaining so he will provide the latest factual info that I doubt I could find on my own, tailored to my specific health profile. Since I make a 5 hour drive each way to see him, I obviously I think a CLL specialist is a priority.

DoriZett profile image
DoriZett

I am a firm believer in "front loading" your knowledge (before you need it). Trying to grasp it all in the 11th hour of treatment can be more stressful. Understanding the treatment landscape and the pros and cons of what is currently being used is a basis for your education. Of course treatment options are changing rapidly but if you understand why some new treatment might be better than the previous one - it helps if you understood the pros and cons of the previous treatment to compare. It also gives you more knowledge from which to question your doctor about why he/she might be choosing a certain treatment. And being advised by a CLL/SLL specialist is also key. Using this time to consult with several specialists (if your insurance allows for it) can help in understanding the pros and cons of each treatment choice. Best to you!

ksteinberglewis profile image
ksteinberglewis

I didn’t need treatment for 8 years. During that time, I took every class, seminar or conference that were offered to learn as much as I could. If I didn’t need the info for myself, it was sometimes helpful for others. I would do that rather than trying to figure out which is the best first medication for you. Work on being happy and healthy and the rest will take care of itself. Make sure you have a good doctor and get a second opinion from an expert ( when you don’t need one) It’s good to have in your back pocket Happy holidays

Classicaljazz profile image
Classicaljazz

A helpful CLL Treatment Decision Tool is accessible by clicking on the the Clinical Care Options (CCO) link or the CLL treatment decision tool link at: cllsociety.org/2020/04/cll-...

You can then register for free to use the tool and access other educational materials on the CCO webpage that pops up. The CLL Treatment Decision Tool provides immediate feedback after filling in your CLL specifics to see the suggested CLL treatment opinions of five CLL experts for a standard CLL patient with your specific conditions (first-line, second-line, or third-line therapy, del 17p or TP53 mutation, history of cardiovascular issues or anticoaguation therapy or uncontrolled hypertention, bulky disease, creatinine clearance less than 25, what if any was previous treatment and if it gave a durable response more than 2 years).

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